Autism Isn’t the Enemy
Kristie Robin Johnson
NOTE: Every year during April which is Autism Awareness Month, I post this piece. This year it feels even more important than ever to reflect on the myriad trials and accomplishments of the nearly six million Americans who live autism spectrum disorders and other developmental disabilities. In this time of pandemic and uncertainty, it’s important to remember how truly compounded this collective upheaval is for individuals with disabilities.
A tear escaped from my eye as the words left her mouth—“I hope my daughter dies before I do.” I had broken my solemn vow not to cry while watching Autism: the Musical, an HBO documentary that depicts the lives of families with autistic children. I cried because I know firsthand the frustration, pain, and fear that lead this mother to make such a shocking statement. Like the daughter that she refers to, my 14-year-old son has autism.
I had promised myself that I would not cry because, quite frankly, I am sick of crying. Most accounts of autistic life are filled with “woe is me” and vaccination vitriol. While our journey has been anything but easy, I have learned an important lesson that totally changed my outlook. Autism is not the enemy—ignorance is the real foe.
I realized a long time ago that if I wanted the world to accept my son just as he is, I must first accept him and love him, exactly as he is. For many years it pained me that my child wasn’t on the recreational soccer team or very good at making friends. Outwardly, he appears to be a social recluse who literally rides the short bus to school. But there is so much more to him than meets the eye. And when I stopped being angry because he doesn’t fit the mold that society would prefer he fit in, I really began to celebrate every nuance of my unique child—autism included.
I no longer dread the daily challenges of our life. I revel in them. When someone stares as he carries on a conversation with himself in the Wal-Mart, I view it as an opportunity to raise awareness. When we are at birthday parties and parents ask “Why isn’t he playing with the kids?” I simply educate them. I explain that people with autism are often socially introverted and playing alone does not mean that they are lonely. I am no longer defensive, embarrassed, or ashamed. Actually, I am hopeful. Being open, honest and positive about his condition helps him to be more independent and confident in his abilities. This attitude also seems to be rubbing off on others.
A few years ago my son had the absolute mother of all meltdowns at his school’s open house one week before school started. He screamed, yelled, cried, rolled on the floor and pretty much exhibited all the characteristics of a full-blown fit. As expected, people stared, whispered, and shook their heads. Some teachers were even visibly shaken. But one little girl who had been in a class with my son the previous year walked up to him, unafraid and totally calm, she put her arms around him and hugged him. Almost instantly, he calmed down. She looked beyond his faults and saw his needs. This was a particularly poignant moment for me. A child was able to rise above ignorance in a moment when many adults could not.
Today I accept our unpredictable life and cannot wait to see what tomorrow will bring. I welcome the weekly therapy appointments, sometimes erratic and quirky behaviors, tense IEP meetings, and questions from curious (not always rude) strangers. My son is a wonderfully exceptional creature with gorgeous eyes, a lanky build, and a certain penchant for calendars and arithmetic. He craves independence and chicken McNuggets and has taught me everything I know about bravery and courage. While I certainly understand the frustration of the mother featured in the documentary, I do not agree with her sentiment. I hope my son lives a long, fulfilling life long after I am gone. I am confident that the unconditional love of his family and friends will be enough to sustain and protect him even when I am not around.